Tag Archives: Emotions

We’re coming up on half a year since our 24 year old son with autism, a presence for all but four of our married years, moved to his group home.

Someone described empty nest couples (sorry for the mixed metaphor ahead) as two people finding that “the cushion is gone.” Two people with a relationship… what? invested in? distracted by? absorbed with? filtered through? children wake up and find this empty space between them and start trying to scoot together across it. Or refill it. Or whatever else people do with empty spaces.

Deferred desires long stuffed under the cushion become visible. Missed time with friends and extended family, skipped travels, unmade personal touches to home and yard, shrugged off study and career opportunities and piles of other hoped-for endeavors are there, but harder to pick up now that the restrictions of age, time and overworked finances have fallen into that space with them.

Old grievances come into the space. The demands of the special need were exhausting but they buffered deeper discussions and discoveries that the couple should have shared. Now these flop in with all of their emotional distortions and disputed memories and toxic colorization of today.

There’s pleasant stuff, too. A gentle pace of life was buried under the cushion and can be restored. Daydreams can be shared over coffee or cocktails. Decisions can be talked out at length. There isn’t a frayed and fragile cushion sitting there demanding urgent care. Life doesn’t have to be lived as a constant emergency response.

He’s done well in music therapy, even showing some potential on drums.

He’s eclectic in his tastes. He likes Disney movies for their music; he enjoys soundtracks by Rodgers and Hammerstein; and now and then he gets hooked on a popular song and tracks it down on YouTube to play over and over.

Now that he’s in his own residence, reminders of his likes and quirks sneak up on me as pleasures rather than form a constant din. That happened quickly. We’ve been less than a month with him living elsewhere.

This frosty morning, too early, I hopped in the car to go to work and punched on the car radio. This was playing:

I don’t know why our son took a liking to this song years ago, but it’s one he circles around to every few months.

I started laughing and got a bit misty eyed on the short drive to work. The song had me thinking fond thoughts and offering little prayers for our son.

We have him over once a week. It’s not a long distance relationship. But tender thoughts move in quickly to drive out the anxious energy that care giving required and sustained over decades.

The staff at our son’s new group home are encouraging us to have him there full time instead of just weekends. People with autism benefit from (heck, generally insist upon) predictable order, and Joey needs greater regularity in the new place.

But for our part, Melissa (mom) had a good insight for keeping him close at this time of the year. Joey loves Christmas, and to let him spend time in familiar company, decor and activities showed him “that things he loves are not going away.”

He’s having a very merry Christmas. I can’t remember one more smiley and less moody. Last night his brother and sister-in-law took him to dinner, and this picture reveals how much that meant to him. He’s not one to smile for the camera, after all…

Later they went out to visit some old friends and he was not happy to see them go. He opened the drapes and watched them get into the car and even verbalized feelings about wanting them to come back in.

We get it, this inevitability of change. But it is going to be some hard going in our hearts in the short term.

Accenting the emotions is an Arctic cold front sitting on us for the time being. At first it was just our usual hard winter cold with blue skies and bright sun, but yesterday it went to bleak gray along with… with… well, I’ll let my Chevy do the talking. I could start a post with “It was a dark and stormy night” and be only a tad melodramatic.

Work is kicking my butt. We set a sales record in my little department but my body is not what it was and the aches and pains never seem to go away. I’m not sleeping well stewing about Joey and work and bills and and and and.

But that’s another point in favor of making Joey’s transition happen. Melissa and I are not getting younger and our skill set and energy for care giving are not going to improve.

The church family from our last place in California is suffering through several members’ deaths in recent months. These were folks around our age and younger, and two were without warning. So that’s more pull on our hearts and our minds are grappling with this life’s impermanence and fragility (yes, yes, another point in favor of getting on with Joey’s transition).

Then there’s the coming transition in our marriage. Don’t even have my heart and head fully wrapped around what empty nest will be like. How will we be when all the decorations come down and Joey is moved out and the flurry of holiday happenings is over and we’re sitting here staring at each other across years of deferred relationship?

Might as well end this with that question mark, since there are so many things in process, unfinished and unknown swirling through our lives right now.

Family care giving is as full of constellations as our South Dakota night sky.

There are parents caring for kids, of course. But also kids of all ages caring for parents. And spouse for spouse, sibling for sibling, friend for friend, ex for ex, neighbor for neighbor…

After my recent musings about our son’s transition to a group home, I got this message from a friend in the region,

I just read your blog post about Joey’s transition and thought I’d share our journey, for perspective. The same time you were moving Joey in, we were moving my parents from the farm to assisted living. This transition took a turn, a few days in, when suddenly it became necessary to move my dad into memory care. So now they are in 2 separate facilities, both a fairly good fit for each of their needs, but they are separated for the first time in 57 years. When Dad resists, it’s especially hard on Mom who put so much effort into keeping him in the home he loved. Sadly, and fortunately, less resistance from him gives Mom respite but means he’s less engaged and more confused. He’s letting go of his connection to his home and eventually to the people he has loved, as must happen. It seems to me that Joey struggling against his separation and transition is a sign of life and love. Having found a good, safe place for him, he is a pretty lucky guy to have more than one place where he is cared for and loved by people who have the stamina to provide what he needs. I still hope to have that coffee on one of my visits, but concerned relatives seem to fill my dance card these last few trips! Peace!

Our friend’s ability to see the good things in all of the trade offs is so important. Every constellation of care will have these – some seemingly essential things lost but other wonders gained. Those latter must be illuminated and gazed upon. They are lamps of meaning and value against what can become, if not resisted, dark and empty feelings of futility and despair.

So twinkle on, whatever your care giving constellation.

Do all things without murmuring and arguing, so that you may be blameless and innocent, children of God without blemish in the midst of a crooked and perverse generation, in which you shine like stars in the world. It is by your holding fast to the word of life that I can boast on the day of Christ that I did not run in vain or labour in vain. (Philippians 2:14-16)

Well, maybe you are. But since care giving puts a whuppin’ on body, heart and mind over time there’s no surprise that our lives reflect the damage.

I’m currently reading Being Mortal but Atul Gawande. The author is a surgeon who also writes outstanding prose that invites the lay person to look at medical issues and medical professionals to look at the human impact of their work.

Yesterday, I read his description of an adult daughter caring for her father,

Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial… The burdens for today’s caregiver have actually increased from what they would have been a century ago. Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner. Last minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home…

Maybe you are an amateur trying to be caregiver, therapist, clinician, advocate, mommy, daddy and everything else to a loved one living with autism. You feel like a lone idiot with a leaky hose when the job needs a landscape company.

So if you’re out there feeling depressed, or enraged, or exhausted, or or or or… just repeat after Dr. Sheldon Cooper:

Today’s e-mail regarding a residential placement for our 23 year old son with autism:

Unfortunately, from speaking to XXXXX there will not be any pre-move meeting to discuss potential dates to move Joey into YYYYY. This is due to being short staff and not having staff in place at YYYYY to best serve Joey safely. According to XXXXX, staffing should be figured out by mid October I was told.

It was only a few weeks ago that we were given a tour of a place, told we had five days to decide, decided, and then received an offer for him to move in.

Now, the whole thing is

How about a little One Republic while life’s on hold?

Stop and stareYou start to wonder why you’re here not thereAnd you’d give anything to get what’s fairBut fair ain’t what you really needOh, can you see what I see